Bucking the Mainstream

Last week we started the process of getting K a new neuropsych evaluation. The last one she had was in first grade, and because she is currently outplaced, we need something new to figure out what's best for her moving forward. The school she is at, while great, isn't a long term solution, but we have yet to tour any school that fits the bill. We hope the new testing will point us in the right direction, when it comes to choosing another school down the line.

The thing is, I am nervous the kind of school we want for K doesn't exist. I also worry that we'll be pushed to choose a rigid, ABA, school. Why? Because after spending just a short amount of time with K, our new psychologist asked if we had toured one particular school, which is considered the "most" ABA school around. It was a school not even on our radar, quite honestly. It has a long wait list, for one, but it is also a school I didn't think served children at K's place on the spectrum. I know these days it is cool to loathe functioning labels, but the school, I thought, served a more severe population (although I could be wrong.)

Honestly, we don't really want K in a strict ABA program. Yes, she requires a very solid routine, but she is also a child who ends up feeling bad about herself if she doesn't "earn" all her stickers, or rewards. She suffers from probably the lowest self-esteem possible, and ABA isn't great for a kid like that. Sometimes it can just leave a child feeling like everything she does is wrong, and I am trying so hard to get away from that model. The school she is in now doesn't use ABA, and she is doing so, so well. But, the reality is, we'll have to move on from there eventually (for many reasons.) So far, we are coming up empty in terms of options.

I know there are various ways ABA can be done, and there was a time it was the only therapy I wanted (mostly because I was told it was the gold standard), but I just don't see it working for the kid K is now. There are parts of my child that ABA would want to change, and I am really in a place of wanting K to be herself. To embrace who she is, and not think she needs to be a different person in order to be a worthwhile human being. Passing is not my goal for K. Mitigating anxiety, helping her achieve the things she wants to achieve, those are my goals. Making sure she stays seated for dinner, doesn't jump up and down when excited, or sits in a class of 30 kids without issue, are not. My hope is that she can surround herself with people who completely accept her, who will love her, quirks and all. I am sure that sounds naive, but not more naive than saying I hope one day K is a different person, who doesn't look autistic.

Unfortunately, because ABA is the gold standard, that's what most schools use. Changing behaviors is a big part of therapy when you have an autistic kid. But, what happens when you don't want to change behaviors? When you realize trying to change who your kid is, only makes things worse? I'm not talking about letting aggressive behaviors go (although I do believe behavior=communication, and there is always a reason for aggressive behaviors. I know with K there certainly was, and finding out the reasons behind them=buy buy aggression.) I'm not talking about letting my kid get away with whatever she wants, because she's autistic. I still teach my kids the same I would any child, but I am not looking to change who they are at their core, and, unfortunately, that's the experience we have had thus far with ABA, and related social teachings.

Some have suggested I just homeschool, which, sure, is a great idea, except I know my limits, and there is a reason I changed my major from Education after just one semester. I don't have the patience. I don't have the degree. I don't think I would do K justice being her teacher. If at all possible, I'd love for her to be at school, with peers, and with people qualified to teach her. Homeschooling is a last resort to me, and we aren't quite there yet.

But, on the flipside, I am realistic that the program we want for K very well doesn't exist. Getting away from the goal of wanting our kids to "pass" is a fairly new idea, and the majority of people still see autism as something to be fixed.

So, here we are, going forward with new evaluations which, in the end, will probably suggest programming we don't want for our child. We'll move forward with the testing because we need it to keep K outplaced anywhere, but I would be lying if I said I wasn't nervous the district will use it to try and force programming we just don't want.

I'm not saying ABA is inherently evil, or that there are kids who don't benefit, but I really believe it won't help K at this point in her life. If only there were more schools that looked past ABA, as well.

The Journey

I've been a bit overwhelmed lately.

Just a bit.

To make a long story short, we went to battle with our school district over K's placement. We were just d-o-n-e, done. There were a few incidents, that for K's privacy I won't go into here, that completely and utterly broke down trust. She ended up being scared of going to school. Scared of saying anything to any adult at the school. There was a change in her demeanor, from the first few weeks when things seemed to be going well in her new class. Things happened that the school thought were not a big deal, that were the biggest deal to us. So, we hired an advocate, and pushed for out placement.

At first, things didn't go well. If there ever was an us vs. them moment, it was our last official IEP meeting. When the school chooses to bring legal counsel, you know the gloves are off, and working together, collaboratively, is off the table. At least, that's how we felt, as parents.

We spent a nail biting week, waiting for any response from our district. A week that literally almost sent me over the edge, and that's not an exaggeration. A week where things went downhill fast, and where I thought we'd end up living in a ran down by the river, because fighting for our child was probably going to cost us everything.

Our advocate is great, don't get me wrong, but I was still scared to death. We had a good case, but our distrcit wasn't reacting in the way everyone assumed they would. Our pediatrican had pulled K from school at this point, saying she was exhibiting signs of PTSD, and so I had a child out of school, and radio silence from the district. We did all we could to garner a response, and waited. I don't know how many years that one week took off my life, but I hazard to guess it's no small number.

But, then, miraculously, everything turned around. The Superintendent got involved, and we had an emergency meeting with her, the head of special education, and the district psychologist (the one person I had been asking for at our IEP meetings, and the one person they always failed to invited). And they really listened to us. And agreed with us. And...we prevailed. Like, really, truly prevailed. I still have a hard time believing we won, and am always waiting for the other shoe to drop, but thus far, everything has gone well.

Currently, we are touring private schools for K, and she is recieving home tutoring in the interim. Or, she was until our awesome tutor got selected to sit on a jury. Here's hoping K clicks with whomever we get next, just as well. School selection is taking a lot longer than I anticipated. I figured we'd bang out the tours, and pick one within a couple weeks. So far we've only toured one school (with another on the docket this week), and I've yet to even hear from several others (one of which I am really liking for K, inparticular). Next week is April vacation, so this is definitely not going as fast as I would like, but at least we have a plan.

At the end of the day, we did end up spending a good chunk of money on a really great advocate. Getting K into the right program is our priority, though, and even though no one likes to write a big check, it was more than worth it. We had a good case, but hiring someone who knew the ins and outs of the law, and who was a calm voice in a meeting (when all I wanted to do was scream and cry), was priceless.

Hopefully, we can move on and find a great school for K. Fingers crossed.